MY VESTIBULITIS

ME AND MY VULVA SHARE PERSONAL STRATEGIES FOR HEALING PELVIC PAIN

WELCOME

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. Well, I’m not…so, welcome to my blog! There aren’t definitive answers in medical literature to explain the pain cycle of pelvic pain and how to heal it - yet. My hope is that my 21-year obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."

A reader generously forwarded this to me which provides amazing detail of all parts of female anatomy with a special emphasis on the clitoris and anatomical structures related to orgasm.http://www.womenshealthinwomenshands.org/Anatomy.htm. Link also has photos of external genitalia. Lots of variation among women!

Our Anatomy

*Images taken from a New View of a Woman's Body, A Fully Illustrative Guide by the Federation of Feminists Women’s Health Centers...Drawings by Suzann Gage

Vulva

If you look in a mirror, you can see your vulva, a fatty layer of skin covered by pubic hair. This woman’s vulva surrounds and protects the clitoris. In addition to the pubic mound, the vulva includes the outer lips and the anus, which are darker in color than the clitoris itself or the skin surrounding it. The visible parts of the clitoris in this illustration are the hood; the frenulum, where the skin of the inner lips meets at the glans; the clitoral opening to the vagina; the hymen; the fourchette; the perineum; and the urethra.

Muscles Underneath Clitoris

Beneath the pubic mound the pelvic bones flare out forming a triangular space, called the pelvic outlet, which is generally wider than in men. During its birth the baby passes through this outlet.

Two pairs of long slender muscles frame the pelvic outlet. One pair (the ischiocavernosus) runs alongside the pelvic bones, forming two sides of the triangle, with the glans of the clitoris at its apex. The other pair (the transverse perineal muscles) extends laterally from the perineum and connects these muscles, forming the base of the triangle. A third pair of muscles (the bulbocavernosus) also extend from the glans of the clitoris within the triangle downward under the outer lips, connecting at the perineum. You can locate these muscles by squeezing as if you wanted to stop the flow of urine or a bowel movement.

During orgasm, these muscles, which lie just beneath the top layer of skin and fat, all contract in unison, compressing the soft, engorged tissues of the clitoris between them. At the same time, they compress the more interior tissues between themselves and the underlying broad layers of muscles.

A small ligament divides the cartilage when the pubic bones meet. It is attached to the clitoral shaft and draws it and the glans up during sexual arousal. The round ligament of the uterus (or womb) runs along each side of the lips of the clitoris.

Erectile Tissue of the Clitoris

Through self-examination, you can locate many of the structures which lie beneath the surface of the skin.

Under the top layer of muscles lies a layer of erectile tissue ad blood vessels. In the top layer of muscles lies a layer erectile tissue and blood vessels. In the clitoris, there are two types of erectile tissue: one is more firm and the other is more elastic. When filled with blood during sexual excitement, they both become firmer and support erection. The blood that fills these intricate, tightly packed compartments of tiny arteries and veins comes from larger arteries.

The shaft and legs of the clitoris are long, thin bands of firm tissue which flare outward from the shaft along the pubic bones. The bulb of the clitoris, which is underneath the outer lips and top layer of muscle, is made up of the more elastic tissue. Another spongy body, extends inward along the ceiling of the vagina. This pad of soft tissue can be easily located by inserting your finger into the vagina and pressing forward towards the pubic bone; it surround the urethra, undoubtedly protecting it from direct pressure during sexual activity. This structure was not named in textbooks so we called in the “urethral sponge”.

There are two sets of glands within the clitoris which have ducts that open to the outside. One set are minute and their specific function, if any, is unknown. The other, the vulvovaginal glands, do secrete a few drops of fluid during sexual arousal. Usually, a woman becomes aware of the latter glands only if they become infected and enlarged.

Pelvic Muscles

Attached to either side of the flared pelvic bones and wrapped around both the rectum and vagina is the pelvic diaphragm, a voluntary muscle. All the structures of the clitoris rest on this large muscle which tightens the rectum and vagina when contracted. Dr. Arnold Kegal of Los Angeles has drawn attention to this muscle, the pubococcygeal, by advocating that it be strengthened to increase sexual pleasure. He recommends that, several times a day, you repeatedly contract this muscle as if to stop the flow of urine or the bowel movement. Childbirth educators also suggest this and similar exercises to make this muscle and the other muscles of the clitoris stronger and more elastic.

Cross Section of the Clitoris

In all of the anatomy and sex education books we studied, there were several cross sections of the penis, but no cross section of the clitoris. This cross section shows very clearly the organs and other muscles involved in sexual response. The clitoris is in a nonerect, nonexcited state.

Not shown are the clitoral muscles which are very much involved in orgasm.

Clitoris in Pelvis

This illustration shows how the clitoris is situated in the pelvis. The insert shows the pelvic bones.

Outer/Inner View of Non-Erect Clitoris

Theses illustrations show the clitoris and its underlying tissue in a nonerect state. Here, the glans is nestled among the folds of the hood and is visible because the hood has been pulled back. The woman in this illustration is stimulating the clitoris manually. Her fingers are pressed on either side of the shaft and she is “rocking” her hands, pushing the flesh of the mound back and forth over the pubic bone. Self-help research has shown that many women’s clitoris do not look a great deal like the standard anatomy-book illustrations.

Outer/Inner View of Excitement-Plateau

3-20, 3-21: Excitement. The clitoris becomes erect when the underlying spongy bodies fill with blood. This signifies the first, or excitement, stage of sexual response. At the same time, the vagina “sweats”, which provides lubrication, the vaginal blood vessels widen and fill with blood and the color of the vaginal walls deepens. At this time there is a noticeable increase in the pulse rate and blood pressure. In most women, the glans is not visible at this point because the shaft has been pulled back by the shortened ligament, causing it to retract from view. She is continuing to apply pressure in rhythmic strokes.

3-22, 3-23: Plateau. The bulbs and the urethral sponge become further filled with blood as sexual excitement increases. The valves in the arteries and veins close, trapping the blood in the organ. This is called vasocongestion. The hood enlarges as its supporting ligament shortens and pulls on the shaft, which is now quite hard, and the legs, which have become rigid also. The perineal sponge thickens as it fills with blood, further closing the entrance to the vagina. The uterus, tubes and ovaries swell. The broad ligament, which lies like a blanket over the bladder, swells and tightens, pulling up on the uterus and causing the vagina to enlarge. At this point, her movements have speed up.

Outer/Inner View of Orgasm

3-24, 3-25: Orgasm. Powerful, rhythmic muscle contractions begin. The clitoris shortens dramatically and the inner lips tuck in, covering it. These events are accompanied by the loss of voluntary muscle control, faster breathing, tingling sensations and, sometimes, a rash or flush on the breasts and stomach. Some women experience sharp spasms in their hands and feet. Since one of her hands has become tired, she continues and intensifies the pressure with the other until orgasm.

Outer/Inner View of Resolution

3-28, 3-29: Resolution. The contractions of the clitoris prevent blood from flooding the tissues further. The tissues shrink as the pulse rate lowers, the valves in the arteries and veins open and the inner lips return to their original color. Within seconds, the orgasmic contractions grow faint and fade away. She is relaxed and covered with a fine film of perspiration.

Inner View of Aroused Clitoris

During sexual arousal, the intricate chambers of these tissues fill with blood which is then trapped by valves, and the entire clitoris enlarges and changes dramatically. The glans and shaft become erect and maintain their positions until resolution. Underneath, the muscles are taut and contract in response to sexual stimulation.

Inner View of Clitoris at Resolution

The clitoris is in its nonerect state. The intricate maze, created by the blood vessels and capillaries in the tissues of the glans, shaft and legs, is called corpus cavernosum, which literally mean body of caverns. The urethral sponge, perineal sponge and bulbs differ from corpus cavernosum in that they are made up of tissue that is more elastic and does not become as hard during erection. This tissue is called corpus sponginosum. In the nonerect state, the valves of the clitoral arteries are closed and the valves of the veins are open.

There is a relatively new company aimed directly at female genital pain. Foria at http://foriapleasure.com/ offers a product called "Relief" that has cannaboids for muscle relaxation, but no psychoactive effect. The other two products are "Explore" for anal sex and "Pleasure" ...for pleasure.*

I live in California and recently had my gynecologist write me a medical marijuana letter. You don't need a "medical marijuana card" in California. Just a letter stating medical need (without giving a specific diagnosis) and a photo i.d. You can look up a prototype online to give to a doctor.

I read through qualifying reasons for medical marijuana in California. The two that apply to vulvar pain are:
1. Chronic pain; and2. Any other chronic or persistent medical symptom that substantially limits the ability of the person to conduct one or more major life activities (as defined by the Americans with Disabilities Act of 1990) or, if not alleviated, may cause serious harm to the patient’s safety or physical or mental health.I then researched if sex legally qualifies as a major life activity. It does.I put my gynecologist in a difficult place because I said that I was going to try it and that she could have me see a pot doc for the prescription or have me supervised and under her care. She researched the idea independently and wrote the prescription. I asked her 3 months before my vestibulectomy surgery and it took her forever to get the prescription to me so I didn't try it before the surgery. The surgery was 8 days ago, so I haven't tried it.

Here is the list for each state about the qualifiers required to get medical marijuana: https://www.leafly.com/news/health/qualifying-conditions-for-medical-marijuana-by-state

*http://whoopiandmaya.com/ also offer a product that I did not research because it seemed like it had more of a "high" orientation and that's not what I was seeking.

Here are vestibulectomy blogs (I had my own vestibulectomy 8 days ago). They might help you make a decision as to whether or not to have a vestibulectomy. My doctor, Doctor Conway, spoke to the success rate of up to 90% and explained it is so high, in part, because doctors qualify patients stringently. So, (and this is likely hyperbole on his part when he says) of the 1,000 potential patients who contact him, he may do 10 surgeries for those who have the classic representation of the type of vestibulitis that responds best to surgery.

I finally got a vestibulectomy! December 9, 2016. I feel pretty great about it. I started writing this blog post 12 hours out of surgery.

DAY 0
I'm from San Francisco, California. After an overnight delay in Detroit, we still made it in good time to see the doctor Dr. Conway in Merrimack New Hampshire that afternoon for my pre-surgical conference and exam. A "one-stop-shop". The approval process in my case had started 2 years ago when a close colleague of his P.T. Stephanie Prendergast (in Los Angeles) wrote to him about my case. He sets up a phone interview, you send all your records, and typically will fly in for a pre-conference, but in my case, he was willing to schedule both at once.

Mom, dad, and my husband all came with me. My husband and I have been married almost 20 years, always with my vestibulodynia. We separated 5 months ago, in part, over sex. He decided to come, knowing that if we stay married, surgery will be part of our narrative. I was nervous about this, but so far it is working out well to have him here. We still have a good relationship (when it is good) and he is caring.

The pre-surgical meeting was a meeting in his office with the four of us and then an exam. Both my paperwork and my exam suggested to him that this might be a very effective procedure. My areas of pain are very specific. I roll my eyes at the name "Q-tip test" and keep hoping that some doctor with pull out something other than a Q-tip sometime. Or rename it something more grand, like a "somatic response protocol using a stemmed swab." Puh-lease!

He said he'd give me full vestibulectomy. I'd have a 3-day timed-release pain injection in my vulva to numb it, oxycodone and/or tramadol, and permission to overlap both with Advil. I'm doing this on a lesser amount of tramadol than the max, no oxycodone, and a good dose of Advil. No water submersion, but showering is okay. No lifting of heavy objects. If a stitch popped, it would be difficult to restitch, but that there would be so many individual stitches that a specific stitch alone wouldn't make a difference.

DAY 1
We drove to Saint Joseph's Outpatient Surgery clinic and I got checked in, put on a hospital gown, peed thinking it might be the last painless pee I would have in a while. (I'm also worried about constipation. The doctor actually said that I can/should "splint" which is when I put finger in my vagina to push put in my rectum down and out.) Eventually, I put myself on oral Ducolax.

They gave me Dramamine for possible nausea and there was something in my IV. I passed out into sleep quickly and when I woke up, I asked if I had had the surgery. The only difference I could tell was that my throat was irritated (intubation - I thought of the divine Julie Andrews and her voice being destroyed so I sang some Do-Re-Mi to check out my own).

I went to the bathroom where I saw blood dripping very quickly into the toilet. My husband asked the nurse if it was normal. It is. Over the next few minutes, the dripping slowed down. They had a thick menstrual pad on me that I replaced with a second. We also stole from the hospital one of those doggy-training pads so that I wouldn't bleed on the hotel-suite bed.

The pain is nothing. Not a problem unless someone sits on the edge of my bed or I sit up and put weight on my butt. Then I can feel tautness that comes from the stitches. I don't want to pop my stitches and bleed, so I am lying in bed. Even if I don't feel almost any pain, I have to have this heal well and am accepting help from my posse at this point.

The thing I am most aware of is that my muscles around my groin - inner thigh, hip, lower and lower back feel tense which I am worried about because it has taken so long to get relaxed pelvic floor. And I am aware that I shouldn't sit up. Peeing is fine, although I am leaning forward to try and direct the stream away from the vestibule. Or, hah!, my genital area "formerly known as" my vestibule.

DAY 2
Why did I not pack more than 3 pairs of underwear for a 10-day trip? Oh, yes. I don't wear underwear and it was an afterthought. I just happened to throw it into my suitcase at the last minute. Recovering from a vestibulectomy requires a lot of underwear. I'm bleeding constantly (into a menstrual pad) and my underwear requires almost continuous washing.

DAY 3
I am starting to feel my stitches rather than being just swollen and numb. I'm eating more (pudding and tea and oatmeal to a salad tonight), but still not standing or sitting. My one attempt at sitting was on a hemorroid donut - the best invention for vestibulitis. Mostly, I sleep non-stop, interrupted only to take pills.

DAY 4
Today's supposed to be the hardest day as the 3-day local anesthetic has worn off. I am feeling good enough so far.

WEEK 1
Yesterday there was dissension in my family as to whether I should be lying in bed recovering or exercising so that I can fly in another 4 days. My opinion was to lie in bed, as was the doctor's. He said that I am not as far along in my healing as he would like. I am not supposed to still be bleeding. He'll decide on Monday whether I can fly home Monday evening.

I got to see my vestibule in a mirror at his office. It looked like chum. Awful. Once Erik washed it, it looks fine and not gross. I have popped a few stitches at "6" and "7" which is disappointing as those are two of my foci for pain. Maybe the doctor can restitch those for me on Monday? Today, I feel better overall and sat up to eat for the first time.

DAY 8
How painful is it? If you have vestibulitis, you can take the pain of healing from a vestibulectomy. For me, it is less pain than having sex - that "I being knifed while acid is being thrown on my vulva feeling - but about the same as the pain I have right after having sex where I hobble around and think about crying and feel angry at my husband, but without the negative emotion. So, I put that in the good category.

I did a menstrual pad count: 48 pads over the first 7 days. I continue to bleed, but it is getting lighter.

I got very upset with my husband (not sex related) and told him I didn't want to be married to him any more. He talked me down.

DAY 12
I flew home Day 10 with: 1. me in a wheelchair, not because I couldn't walk, but because distances between terminals were far; 2. little pain until the last two hours of my flight. The number of hours of sitting, the cabin pressure (maybe), not being able to move around to pump my blood out of the surgery sight put me in more pain than I have been. Mom brought two ice backs which I melted down immediately. I was near tears.

I saw my doctor on Day 12 and she said the Tramadol is why I have slept so many hours every day - 20 hours? She asked me to try the no medication approach: heat, ice, Advil. I went off the medication and think I had some withdrawal from the Tramadol (or got a mild flu). I was surprised the pain was manageable. I'd start hurting about 1 hour before my next Advil, but could deal.

WEEK 2
Christmas. I hosted it. I didn't pick up anything heavy, but was able to function fully enough. I sat on a hemorrhoid pad which looks like a donut. Mom wanted to take us to a movie that day and I was like, are you crazy?

I feel the stitches pulling if I move a lot.

WEEK 3
Went to the movies! Brought the pad just in case. The stitches still pull at times, but I also see that they are dissolving and falling out. I have only positive feelings towards my vulva. This is a big change from my hostility I felt because of being in pain for so many years. It feels like a complete reset.

I have some swelling which the doctor said was normal. I had some focal pain that the doctor said was likely a response to a larger nerve branch having been cut.

MONTH 1
I went on a few walks in week 3 with some pulling of my stitches. A week later, I went swimming and everything felt great. I only have one stitch remaining.

It is so nice to be in the world and not have to have an ongoing "conversation" with my pain.

I also have worn tight work-out lycra pants this week. Yahoo!

WEEK 5 to INFINITY (I hope)
I have no pain. I was able to have sex. My pelvic floor was tight so I was sore, but not vestibulitis sore.

I am able to wear underwear. I don't have my hand down my pants anymore. What a miracle.

I feel stupid for waiting so long. But people tell me not to feel regret for time passed.

PHOTOS
I couldn't touch my surgical site for the first number of days and it was so swollen that a photo would not have shown anything. Each photo is taken at the end of each week.

Week 1

Week 2

Week 3

Month 1

Week 5 Completely Healed

You can see the stitches mostly dissolved at Month 1. That's the white stuff.

Also, the entrance to my vagina is more fleshy than it was before. My "g-spot" was pulled forward and sits at the entrance. It's not magical, that just happens to be where it is.

ABOUT ME

Should I wear underwear today? What is wrong with me? What should I try next? Since I was 22, I've been a mess: vestibulitis, yeast infections, nerve and body pain, clitoral adhesions, sexual fear, autoimmune disorders, and bipolar 2. Phew! I'm happily married, the poor guy.